LUPUS IS LIVING WITH ME & I'M LIVING LIFE!!
Take a journey into my universe.
Partake in the unveiling of my deepest, darkest and intimate realities.
Experience my struggles with life and my battle against lupus.
Explore with me in my quest to discover happiness in my own utopia.

Embrace Today By: K. Wilhelmina Floria

Saturday, August 28, 2010

I woke up this morning deciding I’m not going to let my heath win. I’m going to fight. I stepped on the scale; I weigh 309 pounds, the size of a baby elephant!! My blood pressure was 146/77.

Today I plan to juice and drink cantaloupe and eat some Kashi Go Lean cereal with Almond Breeze milk. I’ll drink a cup of coconut milk. I plan to make some tuna salad, eat frozen grapes and maybe broil a chicken breast for dinner. These are my plans, just as I plan to exercise this morning. Maybe tomorrow, that will take a little more encouraging from me.

Here’s the deal, in August of 2008 I was having difficulty breathing. I figure it was the smoking. I smoked since I was 8 years old. I’ve been around cigarette smoke since I was born. So hell my lungs must be totally destroyed. Mind you I had stopped for a few months then started back up. But there was something a little different this time. It hurt to breath; I couldn’t walk, without gasping for air. So After work I decided to drive myself to the emergency room.

I found parking right on the corner. Oh I should tell you the car I was driving was a 20 year old Honda Accord that was full of mold. Which I thought was the issue. I sat in the car and smoked the last cigarette I had in the pack and knew they were going to give me some antibiotics and send me home.

They stuck me, poked me and x-rayed my insides and said they were keeping me. All those years of smoking has finally caught up with me. I knew they were going to tell me I had lung cancer or emphysema or both, my days were numbered, this is it. I knew the outcome wasn’t going to be good, especially since they weren’t telling me anything.

After a week they told me I had COPD, emphysema for sure, but something else was going on. They suspect that I had lupus, and it was in my lungs. Yes that is my diagnosis, ‘LUPUS SLE’. My mom had Lupus and I had symptoms my whole life but the doctors always dismissed my concerns, I guess they thought I was a hypochondriac. My hands swelled and hurt, I got a rash whenever I was exposed to the sun, being tired all the time. The doctors could never find anything wrong with me. I had an ear infection and had a bad reaction from the antibodies which contained sulfa. Two of my children were born a month early. These were clues but never put together.

They talk about markers; they talk about Lupus being hormonal. The year before I was diagnosed I had a hysterectomy. Everyone kept telling me I was going to feel good after they pulled out my pipes. I was waiting to feel this great feeling that never came.

I wish the doctors were more knowledgeable asked the right questions and maybe I wouldn’t be going through this downward spiral in my health.

Sometimes I feel better. I’ve been on steroids for 2 years and added a hundred pounds to my body that was already over weight. I use oxygen when I walk outside. I take a fist load of medicine in the morning, more in the afternoon and even more before I go to bed. I take Benadryl to help me sleep, which is no longer working. Sometimes I take 2 Motrin 400mg each to help with the pain and to help sleep. But no matter I still get up all night to go to the bathroom. I mean my body is so tired I don’t want to move, but I got to because my bladder hurts. I found that if I take the Motrin and Benadryl together I sleep all night. But no matter how long I sleep I'm still tired in the morning.

So I have Lupus SLE, Emphysema, Interstitial Lung Disease (IDL), Sever Sleep Apnea, Depression, Anxiety, Acid Reflux, Seasonal Allergies, Sinus, and Varicose Veins. I’ve told the doctors that I have chest pains and a pain in my back on the left side where my lungs are. My memory is bad, I get these dizzy spells. They shrug their shoulders. Here we go again I must be a hypochondriac, imagining these things.

I met a doctor for my IDL, he’s a transplant specialist at Columbia Presbyterian Hospital. He said my Emphysema and IDL is minor but suggested that I have Pulmonary Hypertension (PH). Another fucking diagnosis! He recommends that I have a Heart catheterization I spoke to my Rheumatologist and she says they don’t do that at our clinic and she doesn’t think they do it at any of the city hospitals. Did I mention I don’t have insurance? (Make too much too for Medicaid and not on SSD long enough to get Medicare.)

So reading up on PH, it’s a rare disease, the blood pumping from the heart to the lungs and from the lungs to the heart builds up or something. It’s a progressive illness and untreated the prognosis is not good. I had a stress test that shows some activity on the right side of my heart and the results indicated that I had a heart attack at some point. I had an echo and it doesn’t show any blood clots. The only way to confirm PH is with the heart catheterization. Symptoms, fatigue, angina, shortness of breath upon ambulation and dizziness which I have been complaining about for years, even before lupus, when I had health insurance with my employment.

I am so anxious to get this heart catheterization so I can take yet more meds, but hopefully finally feel good and give me an extension on my life.

So this is the start of my story, my battle against this horrible Lupus and all that it has brought with it. I’m going to lose these 150 pounds of water, fat and blubber! I’m going to exercise and eat healthy. I’m praying and going to write this here blog and hope someone reads it and encourages me. And if in the interim I inspire someone I will feel it is worth my time.

My 2Cents Not Worth A Penny

me

About Me

We live in a world full of certifiable, psychotic and derange crazies who are all on the verge of madness. Everyone is insane except me. I am sharing my rational, balanced and lucid knowledge in an attempt to save the world of total confinement in insanity.
But this is just my 2Cents and it's not worth a penny.

An Orphan’s Hope

Defecting from today’s sadness,
with hope of realizing tomorrow’s happiness.

Polluted dreams,
diluted realities.

Childhood fantasies,
adult terror.

Confined in a vacuum of isolation,
choking on ignored emotions.

An orphan quietly dying,
from an trivial life.

10/5/08

Highway to Success

Highway to Success

On my journey of life,
I took the path to the left,
off the express highway of success.
I trotted along melting tar,
through dusty dirty roads.
Over stony trails.

There were ditches in the darkness,
in some places.
A few times I fell flat on my face,
I’d get up,
wipe the blood from my nose and keep on going.
Blinded by the sun setting in the west,
As I traveled toward the fangs,
leading to the belly of the beast.
I’d trip on stones,
fall on my ass,
rise to my feet,
rub the tenderness and keep marching ahead.

There were signs posted pointing to detours,
I easily ignored.
There were alleys I could sneak down,
but on my course I stayed.
A map was folded in my pocket,
I never checked my directions.

It was an exciting journey of life.
Climbing up hills, rolling down.
Climbing back up and rolling back down.
Seems this last time,
I’ve been going down quite a while now.

Don’t see no detours,
no more alleys to sneak down.
My map was lost a ways back.
Long ago I was on the express highway of success.
I tried hitchhiking on the big rigs of lotto,
The numbers on the license plates just passed me by.

I’ll never get back onto the express highway of success.
I have to follow this path,
forward I go,
straight ahead.
On this bumpy path I choose.

Back when I began this journey of life.
While traveling on that express highway of success,
I woulda’, coulda’, shoulda’
took a right instead of a left.

I didn’t ask for directions.
I didn’t listen when directions were offered.
I ignored the detours.
I passed the alleys.
I lost my map.

I knew where I was going.

Somewhere on this path I lost my dreams,
and found a brick wall.
Now I know, I took a dead end road to failure.

I’m looking for my map.
Hoping to see one of those alleys.
Searching for those detour signs.
And asking for directions
back to the express highway of success.

I didn’t know how to refuse.
I cheated addiction,
I cheated HIV,
I cheated homelessness.

But I couldn’t cheat fate.

Gods’ vengeance prevails
just sucked the air right from my lungs,
presented me with the gift of emphysema,
maybe,
maybe if I partied in moderation,
No, No!!
that’s just stinking thinking.

I batted my bedroom eyes,
and flirted with the devil,
I wasn’t too shy to dance,

I must pay the price,
I crave oxygen,
And sleep, oh blessed sleep.

I partied hard,
I had fun,
now it’s time to pay,
an autoimmune disease is fighting me,

and Lucifer is still tempting me.

While God watches my
freedom of choice.
9/27/08

Glass Lady (what life was living with a crack head)

I can no longer compete,
with your lady in the glass.
She's your greatest love,
she means more to you,
then me or your children.

She's your princess,
your shining star.

You'll stay up all night for her.
You'll spend every penny on her.
I'm jealous, I can't compete.
I can't send blood rushing,
through your veins,
nor can I keep your heart pumping
at such a terrific pace.

No,
I can't keep your attention,
as long as you can hold her sweetness in your lungs.

I am only a woman,
a sad, lonely woman,
with no joy,
no happiness in me.

I can offer you my tears of hurt.
To me you lie, to her you give everything.

Me you abuse,
her you worship.

Your family you allow to struggle,
to her pimp you give more than enough.

You tell me not to worry,
everything's gonna be taken care of.

This I believe,
because in time I'll be able to take care of me,
then your mistress can give you

one

final

HEART ATTACK!!!!!!!!!!

Fate Be Told By: K. Wilhelmina Floria 6/9/09

Weeping sorrows,
full of illusions and dissatisfaction.
Stimulating anxiety,
a designer disorder,
yearning sedation,
requiring rehab.
Seeking amends
for a life
unfixable.
Really too tired to care.
Hiding,
deep in the shadows.
Invisibly trying to be seen.
Now.
Was it fate
that gave me this day?
Or,
was it the life I lived
that became my fate?
Once I tried to steal joy,
sure that happiness would follow.
So said,
that time is gone.
Today,
fires of hell are trying to engulf me.
Blinding my eyes
With oozing tears of strength.
Eliminating the dark flames of hell,
to a path where heaven shines,
and warm my cold heart.